Alisa Von Hagel
Grob. Rachel 2011. Testing Baby: The Transformation of Newborn Screening, Parenting, and Policymaking. New Brunswick, NJ: Rutgers University Press. $27.95. pp. 256. Paperback. ISBN-10: 0813551366.
Article first published online: 28 MAR 2014
© 2014 Wiley Periodicals, Inc.
World Medical & Health Policy
Volume 6, Issue 1, pages 107–108, March 2014
How to Cite
Von Hagel, A. (2014), Grob. Rachel 2011. Testing Baby: The Transformation of Newborn Screening, Parenting, and Policymaking. New Brunswick, NJ: Rutgers University Press. $27.95. pp. 256. Paperback. ISBN-10: 0813551366. . World Medical & Health Policy, 6: 107–108. doi: 10.1002/wmh3.78
- Issue published online: 28 MAR 2014
- Article first published online: 28 MAR 2014
As technological innovations become increasingly interwoven within the fabric of the human experience, this encroachment is simultaneously met with amazement and fear, ambivalence and profound hope. Its pervasive role in the provision of health services has occurred with great rapidity, leading to its unquestioned acceptance by many participants and providers of modern medicine. Mandatory population screening for genetic disorders and specifically newborn screening (NBS)—the topic of Grob's inquiry—is one such case that illustrates how technology unwittingly shapes and redefines such experiences as parenthood and family life as well as our understanding of health and disease. In tracing the impact of the expanded use of this technology for parents, Grob provides a rich and nuanced evaluation of this screening program, an account often absent in the scientific and social-scientific literature.
Departing from traditional approaches to the study of public health initiatives, the author primarily engages in ethnographic research uncovering the complexity of parents' experiences and feelings toward NBS. Employing grounded theory, the author's approach reveals the unintended effects of NBS as it dramatically alters family structure and relationships within and beyond immediate family members. The exploration of parents' experiences following a NBS diagnosis leads readers to conclude that the program is not solely positive (as reflected in much of the medical literature and journalistic accounts) or negative, rather its impact is so complex and variable that it defies classification as such. The contradictory yet compelling emotions and responses to this genetic screening program seem to parallel our own conflicting and indeterminate views of the increasing medicalization of all aspects of life.
Following a brief overview of mandatory NBS and its rapid expansion at the start of the twenty-first century, Chapter 1 identifies the sample of parents used in this analysis. Although Grob's sample only includes those parents with children diagnosed with cystic fibrosis (CF), the diversity among this population is striking. This variation in disease expression is critical for the everyday experience and well-being of parents and children faced with a diagnosis—particularly for asymptomatic children—yet care providers routinely ignore or fail to account for such a distinction. The following three chapters explore variations on this theme, identifying the impact of identical diagnoses and prophylactic measures for parents with children exhibiting a broad range of symptoms and disease expression. Additionally, the author cogently demonstrates how a positive diagnosis shapes the parent–physician relationship and the attitudes of parents regarding these care providers. Medical paternalism, problematic in numerous other contexts, takes on further importance in this research, illustrating the conflicting array of parent responses to the routinization of care for a complex genetic disorder. Throughout these chapters, the reader is constantly reminded of the far-reaching power of this diagnosis for the meaning and expression of parenthood and family relationships, even—and perhaps most profound—among those with asymptomatic and apparently “healthy” children.
Chapter 5 represents a distinct departure, examining the work and success of a subset of pro-NBS activists. While it is a compelling explanation of one group's ability to establish the basis for public discussion of mandatory NBS, in effect controlling the political agenda, it is most powerful in the contrast between activists' reductive message and the great variety and depth of parents' experiences examined previously. The author's presentation in no way belittles or diminishes the activists; rather it clearly articulates a compelling explanation for their current political agenda. Assuming that genetics testing continues to expand—in the number and array of tests required, the use of this genetic information, and the populations tested—further study of their impact on diverse constituencies remains imperative.
The narratives found in these chapters reflect deeply personal, raw, and powerful emotions illustrating the complexity of those receiving and responding to a CF diagnosis that sharply contrasts with most scientific or social-scientific inquiries into health outcomes. This empirically grounded account of parents' experiences identifies numerous avenues for future research that would broaden and enrich the discourse on genetic testing and public health initiatives more generally. Testing Baby is an excellent book for medical professionals—including physicians, social workers, and genetic researchers—as well as policymakers. Through Grob's presentation of NBS' impact on parents and families, she reveals the structural forces that lead to the creation of these particular experiences. A relevant and important contribution that sits at the interface of medical science, reproduction, and parenthood, Grob's work will provoke further reflection regarding the future role of technology and genetic information for the human experience.
University of Wisconsin-Superior